As always I am sitting on my living room couch at one in the morning typing away on the laptop. I’m where I always am at this time but the room is strangely quieter and I’m a little stressed about it all. Tonight, for the first time in his life, Liam is (hopefully) going to sleep all alone in his big crib in his own room like a big boy two-year old.
I am excited, I am proud, and I am nervous.
Until now Liam has only slept in his own room with the accompaniment of a nurse or a parent. Most nights without nursing Liam would sleep in his secondary, smaller crib in a darkened living room with his mother and I splitting the nighttime hours. Tonight we will still split the night with one of us sleeping upstairs and one of us in the living room squeezing the baby monitor and craning our necks toward the hallway where his pulse oximeter sits stretched to its sensor cord’s limit. This change is not for our sleep benefit as someone will still be required to be (fairly) awake and close by. Seizures still happen, condensation collects in circuit tubes,trachs and g-tube buttons can pop-out, there is still a need for round the clock care. But it’s unfair to Liam to expect him to understand a bedtime routine if it is constantly changing due to nursing schedules and my need for some sleep. Thankfully Liam has been very consistent in his sleep schedule of late and we hope that this new set-up will only help that trend to continue.
But tonight I feel like I did almost 22months ago during the 13 days and nights that our then 5 month old Liam was home between his stays in the NICU and the PICU. I have gotten up to take a peek into his room every ten minutes for the last hour. The TV is on but it isn’t on loud enough for me to understand the dialogue so I stare at the screen listening to Liam breathe on the baby monitor waiting a few more minutes before checking in on him again. I’m sure if he could talk he’d be all ” Geeze Dad would you cut it out? I’m trying to sleep in here.”
In my head I know that Liam is a strong boy who can handle sleeping without his dad hovering over him. In my head I know that should he need anything medically urgent his alarms would alert me in time. In my head I know that I have nothing to worry about. But my heart, well my heart has spent half of nearly every night of Liam’s life just a couple of feet away.
Every family has its own set of worries and challenges. No one has it any easier or harder than anyone else, and when done right, all parenting is hard. In all of those differences there can be found a few experiences that maybe every parent can relate to. While many parents don’t understand what life is like having a child with complex medical needs, Karin and I don’t understand what life is like having a child without them, but what parent doesn’t remember worrying about the baby’s first night sleeping alone in another room? (Actually, I’m sure there are families out there who don’t know what it’s like, all the more reason that Karin and I celebrate experiencing the things that “normal” families can relate to.)
So I sit in the living room and I listen to the baby monitor. The slow but metronome-like rhythm of his vent tells me that he’s asleep and Liam’s heart rate shown on his pulse oximeter shows me that he’s definitely in a deep, deep sleep. I know I shouldn’t worry about him in there, and in time, I’m sure that I’ll get very comfortable letting Liam sleep alone like a big boy. But for tonight…I’m going to go check on my boy.
G’night all — Sleep tight.