There’s something that every NICU parent yearns for with all their might, mind, and strength:
A discharge date.
It looms in front of us, taunting us with it’s close proximity at times, and disappearing forever at others. But we focus on that discharge date because it represents a chance for normalcy. A chance for a family to feel whole, a chance for a child and a parent to finally assume their proper roles. A chance to finally begin, to finally start, to finally act on all the things we dreamt about in the NICU.
In Charlotte’s case, a discharge date from the NICU was merely the beginning of a short vacation at home, abruptly ended with a re-admission for a rather severe illness. Since that time, almost three years ago, we’ve made many, many phone calls to grandparents to inform them that Charlotte was back in the hospital.
For me, every time Charlotte is readmitted to the hospital, it is a reminder of how little control we have over her life. In our case, Charlotte’s readmissions are often open-ended. She’s not typically ill, but usually, malfunctioning in some capacity. (Currently, she’s readmitted for this nasty habit she has of not breathing.) We usually leave with more questions than answers, and often we are gaining medical devices instead of losing them.
I used to think that arriving at our NICU discharge date would solve everything; that life would suddenly be better if we could only make it home. Once there, however, we quickly realized life was just beginning to get interesting.
So new milestones emerged: things would be better once she was eating by mouth, or off of oxygen, or receiving the right therapies. Once she finished the right therapies, or started a new formula, or had that one procedure, things would settle down.
But here’s what I’ve learned in our experience:
Opportunities don’t wait for discharge dates.
Every time I watch the nurses place an ID band on her scarred ankles, I am reminded that there’s no discharge date from worrying about your children. I know this isn’t unique to special needs children, but there is something harsh about the reality check a hospital admission provides. A sign-on-the-dotted-line reminder that life is fragile and resilient, harsh and comforting, loud and muted: all at the same time.
If I waited for life to be perfect with Charlotte (or Caleb, or Peter, or anyone else for that matter), we would never begin, well, anything. It may be that next week we find out she’s 100% healthy and we’re free of medical devices for the rest of our lives. It may be 20 years from now that we receive that news. Or possibly never.
But if I spend my life waiting for a “discharge date” how many experiences will I miss? How many opportunities will pass us by as we sit in the waiting room of life?
I have one chance with Charlotte. One lifetime to convey her divine worth, her inherent power, her ability to thrive. One moment in time to teach her about love, about family, about sacrifice and success. One shot to explain how deeply her father loves her, and how unbelievably devoted her brother is to her.
If I am lucky, that moment will last 100 years, and her lifetime will continue long after I am gone. But whether it lasts another century, or our time together is gone tonight, matters little if I am not willing to act in the moment I have right now.
Truly, it is the only one any of us are guaranteed.