Today is Parents of Preemies Day.
Five years ago today, Simone was a little over a month old, and I posted a letter I’d written to her for the occasion, about her first failed extubation.
In the letter, I wrote:
“It seems impossible, but someday your breath will be effortless, unnoticed. Someday we’ll both take it for granted.“
It was less a prediction, really, than a plea. It was an excruciating time. I remember secretly wondering whether Simone would ever learn to breathe on her own, secretly worrying that, in fact, she would not. (Spoiler! She did.)
I am extraordinarily grateful to be able to say that most days, now, I DO take Simone’s breath for granted. But even five years later, I still have days where I cannot. In almost all respects, my time in the NICU made me a less anxious parent, but Simone’s respiratory system remains the one exception. I may be sanguine about fever, about injuries and assorted childhood hurdles, but when it comes to breathing, I am incapable of reason. Simone had her adenoidectomy a little over a week ago, and in the days leading up to it, I was jittery and unsettled–not because of the surgery itself, but because she would be intubated again, because I worried about her airway and the anaesthesia and how her lung damage–the price she paid for the ventilator that saved her life–would affect it all. When Simone has a virus and her asthma acts up, I lay awake for hours at night listening to her cough. I wonder whether, when she is grown up and living on her own, the sound of her cough over the phone will have the power to make my heart skitter and my stomach swirl. I suspect it might.
I think a lot about other parents who have children in the NICU right now, who are still far from confident they will bring their babies home at all. It is difficult to communicate just how emotionally taxing it is to love and mother a baby that might die–not in the abstract, in the sense that “nothing is certain,” but rather with sickeningly immediacy, as in “within the next few weeks.” I have always maintained that it is excellent conditioning for acceptance of the more pedestrian contingency, the nothing-is-certain that is present for every parent, but it is a grueling, even cruel, way to arrive at that acceptance.
I’m co-hosting a Twitter chat this afternoon (and THERE is something I never thought I’d type) for Parents of Preemies Day. There are Parents of Preemies events in several cities around the country, but parents of current and ex-preemies who are either not in one of these cities or are, like me, averse to leaving the house, can join me to chat from 2-3pm EST. If you register here, you’ll be entered to win a signed copy of my book, but you certainly do not need to register to join the conversation (hashtag #parentsofpreemiesday).
The Internet is more or less closed on weekends, so I’d imagine there are only a handful of people reading this. But if you are reading this, and you know someone who has or had a preemie, today might be a nice time to bring them a some coffee and a pastry or two.
I’d also like to give away another two signed copies of my book to current NICU parents, so if you know one, or are one yourself, tell me in the comments. We can all take a minute to send encouraging thoughts to those parents and their babies, and I’ll randomly choose two (parents–most babies cannot read) to receive books on, say, Wednesday.