The weight of always waiting for the other shoe to fall is exhausting. Waiting for the “what if” to happen and always being on edge knowing it IS coming…. an ER trip, an ambulance ride, a hospitalization that could possibly be the final curtain call on your child’s life. These are things “normal people” don’t have to contend with. For my family, we are always in fight or flight mode, whether we want to be or not. I literally carry an ambubag around with me waiting for the moment I have to use it in an attempt to save my son’s life [again]. For families like mine, this is just a typical, run of the mill day of the week. Nothing to see here…

I mourn the loss of enjoying my kids’ childhood. I miss it dearly. I see parents around me who are actually just enjoying their children. They’re taking them to ball games or amusement parks, staying up late watching movies, going to a skate park or a concert. Just enjoying life alongside their children.

My child is work. I’m working nursing shifts. My son’s existence requires 24/7 care. An actual nurse works here in my house and makes a full living and receives insurance benefits because my son exists. I don’t say that to complain; I say that to emphasize that keeping this particular human being alive is work. It’s a J-O-B. Well, more of a volunteer gig for me, but still.

The unfortunate thing of it all is, my other two kids feel the consequence. I can’t fully enjoy their childhoods either. I’m so preoccupied with wondering if I’ve given all of Hayden’s meds, if it’s time to cath him or time for a feed, time for his breathing treatments, time to administer the bowel program, remembering which phone calls I need to make for the day for refills, appointments, dealings with insurance companies.

Everyone has their own problems. I completely understand that. And though mine are so much more intense, I do recognize that no one’s life is perfect and no family is perfect and pleasant and fun all the time. But I would venture to say, for the typical family, the opportunity to have fun easily is more feasible. Our family does have fun, but it is work to master it all. Yet we do it. Because we want to enjoy life, no matter what it looks like. Life is a gift and we try and treasure each day we’ve been gifted and use it to the most of our ability.

“Many are they who say of me, ‘There is no help for him in God.’ But You, O Lord, are a shield for me, my glory and the One who lifts up my head. I cried to the Lord with my voice, and He heard me from His holy hill.” Psalm 3:2-4