“Remember when we said we would never complain about her?,” Zev asked me recently.
“No. What we said was we wouldn’t complain about having to get up in the middle of the night with her,” I corrected him.
Desperate parents can make promises and statements they will one day regret. When D was in the NICU, Zev spent evenings with her. He headed to the hospital immediately after dinner, toting a little cooler with a couple of bottles of expressed breast milk. I stayed behind and handled Lucy’s bedtime routine, with one eye and ear focused on my cell phone.
“Here. Parking. Found meter spot,” the phone would buzz. I mentally followed his steps from the car to the lobby of the hospital, to the elevator, to the NICU where he would scrub his hands and grab a gown, to D’s incubator (later, crib). Once I said goodnight to Lucy and retreated to the living room, my focus on the phone was unabashed. I expected a report of her weight, her oxygen saturation, her nurse, her feeds, everything. He indulged me with news and photos. If the phone went silent for too long, I panicked. So it went, for months.
I was usually still awake when he arrived from the NICU, and before we packed it in for the night, we discussed her progress (or lack thereof, depending on the night). Those were the moments when we made the wild promises to never complain about lack of sleep. What a luxury to get up with a hungry baby! All we had was my alarm, jolting me awake to make more milk for Daphne. Whoosh, whoosh, whoosh, the pump would whine. I stumbled to the kitchen to put the small bottles in the refrigerator, then back to bed. Empty.
Daphne came home and we kept our word. We got up for bottles, medications, just to check her pulse-ox, without complaint. Bleary eyed, but grateful. We got up in the middle of the night to feed her for months, she needed the calories.
Sadly, we are ungrateful bastards human, and at some point we decided that we had the right to a full night of sleep – who am I kidding, a few uninterrupted hours each. Chronic sleep deprivation is another perk of having a child who is medically fragile or with special needs. It is different from the short-lived sleepless period with a new baby. Even when we don’t have to get up, the quality of our sleep is poor, restless with stress, grief, anxiety.
I can only speak for myself, but I am always tired. I used to look considerably younger than my age. Nobody would mistake me for a twenty-something now. My hair is gray, I am heavier, my muscles ache from only sporadic exercise. I reach for a second cup of coffee more often. My patience is short. I complain, then I feel guilty, then complain some more.
As these words flow off my fingers, the “don’t complain, be grateful” mantra repeats itself in the back of my mind, nagging ominously. Easier said than done.
You have permission to complain! Complaining and not appreciating what you have are two VERY different things. Don’t confuse the two, and go easy on yourself, k?? I don’t mind sleep deprivation, but my current complaint is the loud, fighting, ranbunctiousness of two healthy, crazy boys. Seems like the lamest complaint ever. I remember when I was on bed rest with Gav a sister of a friend came to share her experience of her 26 weeker with me. He was 5 at the time, and a recent story was that he was running wild through the house. She told him “no running in the house!” to which her mother responded “just be glad he CAN run”.
But you know what I think? I think the fact that we have gotten to the point of complaint means we have reached some sort of comfort in the fact that things are going to be ok. Not that we have forgotten how much we have to be lucky for, but that life is stable enough to complain about such normal worries as lack of sleep.
I agree with Bridie. You are allowed to complain and it doesn’t make you any less grateful. I often get the sentiment from people when I “complain” about Eliza’s not eating, or theact that it wasn’t until her 5th birthday that she had slept through a total of 100 nights (not consecutive) that I have no right to complain, that I should simply bask in the gratituide that she eats something, or that she is alive and relatively healthy. I wonder how parents of healthy parents would feel if we constantly reminded them that they should not complian about anything because they should simply be grateful their child is alive and well? It probably wouldn’t be well recevied by the masses.
I feel you. I was up every two hours last night because Z has a cold and the mucus gags her, which turns into a big deal because of her nissen. After my second “just humor me” trip to the Dr. we are still in the same place. Did that make sense? I’m not sure…I may have fallen asleep while writing it at some point. ZZZZZZZ
Oh no! I am so sorry Z is still sick. I know the mucous gag well – of course, D doesn’t have a Nissen so for us it means mucous and stomach contents all over the crib. Hope she feels better soon and you all get some rest.
Wow, Bridie is dead on. Just had an aha moment. “I think the fact that we have gotten to the point of complaint means we have reached some sort of comfort in the fact that things are going to be ok. Not that we have forgotten how much we have to be lucky for, but that life is stable enough to complain about such normal worries as lack of sleep.”
Did my time in the NICU. You can complain. You are human.
Thanks, Andrea. I’ve been very complainy lately. I sound like my 6-year-old.
You are beautiful. Believe me, your beauty and any mother’s beauty comes from the inside out, not the other way. The nights without sleep and the days of worry don’t make you ugly. They made you amazing. I get your frustration, but believe me, when we see you, we see just plain beauty. It comes out because of who you are. And who your family is.
I know all to well the type of sleep deprivation your are talking about. Kai never slept more than 2 hrs in a row for the first 8 months of his life after that we would get 4 hrs. He sleeps better now but I will never feel rested again! Living like that changes you forever. It is hard and exhausting and you can not possibly avoid being run down, feast rated and complainy! Thanks for posing this. From one mom dealing with a medically co
Plex child to another, your truth gives me comfort in that weird way that I at least know I’m not alone…hope your getting some rest today!
I know, i’ts weird how knowing you’re not alone gives me some level of comfort. Daphne has decided to wake up asking for milk in the middle of the night. Of all things, we are not going to deny her food. She’s certainly old and smart enough to manipulate, of course, but in my mind, as long as she takes in the calories, I don’t care if she’s manipulating. Sadly, I am tired all the time. I hope Kai is feeling OK this week.