All the Things They Don’t Tell You

You will learn a lot from doctors and nurses in an ICU setting- you’ll also have the opportunity to observe the miracles of medical research and science at work on a daily basis. The doctors do a great job of setting parents up to expect delays. The old adage, “two steps forward and one step back” is a recurring theme. To their credit, they speak in these terms with compassion and empathy. What they don’t tell you- and can’t- is how hard it is as a parent to watch it all unfold and have no power to stop whatever is going to inevitably happen. Like swimming in a pool of wet cement, it is excruciatingly painful and slow.

One of the toughest things I’ve had to watch is the silent crying of my little boy as he’s poked and prodded by doctors and nurses. The ventilator that he needs doesn’t allow him to cry out in pain or discomfort- instead his faces contorts and his mouth opens but there is no sound. Some might view this as a welcome respite, but I want nothing more than to hear the sound of my son crying. It will mean the end of the ventilator and one step closer to an approximation of normal. 

I knew that I would not be able to hold Liam for a little while following the surgery- we got in a lot of snuggle time prior and, in some ways, I’m grateful his surgery was delayed because those extra days spent holding him skin to skin were precious. What they don’t prepare you for is how hard it is to go through days at a time unable to rock or soothe your child the way your entire being demands. There is a hollowness in the crook of my arm that is incredibly painful. I find ways to compensate- “hand hugs” (applying gentle pressure to the top of the head or bottom of the feet) are allowed and when I sing to my son, he visibly calms and I can see his heart rate slowing on the monitor.

The push and pull of my heart towards Liam and Eliza is another difficulty that haunts me. Both of my children need their mother, but only one can have me at a time. While that is generally true of normal siblings, the physical absence from one or the other at any given time is the trouble. I long for a day when I will be at my wit’s end as I juggle the chaos of two kids on a Saturday morning. I long for the day when Eliza wants to help with baby brother and we can explore how many ways we can dump milk on everything out of toddler enthusiasm.

Last night, I tried to relax in the bath and ended up crying into my small glass of wine. The simple fact of the matter is heart-warrior parenting is a long war and coming out of each battle leaves me a bit more weary. But, I slept hard last night and the pain of yesterday has eased up. My endurance is back and today is already a better day. My son still cries in silence, but my heart is mending with his and the doctors think very soon we will hear his wails loud and clear once again.