On September 6, 2010, I'm in the Mothers Nursing Room at Children's National Hospital NICU unit. The March of Dimes shelled out hundreds of thousands of dollars for that room. (Breastmilk is nicknamed "liquid gold" among NICU doctors but not surprisingly, the shell shocked mothers of NICU patients find it hard to produce milk.) Remember that posh spa like atmosphere Tharen?There were expensive leather seats. A gigantic flat screen TV. There are little curtains for privacy. There are all kinds of free stuff connected to extra expensive high end breast pumps.
I was at the sink, washing out my little tubing. It had been a rough 72 hours. My perfect, perfect newborn daughter, the girl who passed all of her doctor exams with flying colors ended up almost dying from a hidden birth defect in the middle of ER. We suddenly went from "oh, a little bit of jaundice don't worry about it". To "you're child didn't flinch during a spinal tap, I've never seen a baby so sick in all my years as a NICU nurse."
So, instead of going home after 3 days of not sleeping during the bright lights of a jaundice treatment--I ended up with my daughter in the middle of Children's National Hospital awaiting her to stabilize enough to have emergency surgery on her intestine.
At one of the early pauses that I had during my hospital stay--I said "I'm going to go pump in that special Mother's Room." My previous attempts to elicit breastmilk in a NICU room from my stresssed body while staring at my non-moving green baby while the male doctors flitted in and out had been unsuccessful. (Remember that joy, Tharen? You work so hard for over an hour and you have exactly 4 drops of breastmilk in the bottle. Never-the-less you carefully label the bottle and proudly give to the nurse to freeze for your non-eating baby's future use?)
So today, I was going to do "self-care." I was willing to leave the comfort of my husband's side, and enter the "Mother's Room" down the hall. My little daughter was not eating anything--formula or breastmilk. She would most likely not be eating for days, even if her surgery worked. But I was going to keep pumping for her anyway. Pumping at that moment was an act of Hope.
I finished pumping. I think I got like 8 drops of milk that time. I carefully started washing out all my little private tubing parts at the sink. Another Mother came up next to me and we started a conversation. It turned out that her daughter already had the same surgery that my Tess needed.
This was the first parent I talked to about my daughter's medical condition. Every other conversation had all been with doctors. They were very comforting and professional. But this was the first person who I felt got what it meant to be a parent who had to confront these issues. I felt myself starting to relax. I hadn't even realized how alone I felt, until I started to talk to someone else in the same situation.
So it was a great conversation.
So it was even more crazy how it ended.
Do you remember that scene in the Matrix when agents suddenly "pop" into people? That happened to me.
The fellow NICU Mom made some mention about how being the mother of a premie is so hard. I said "oh my daughter is full term." She suddenly started screaming at me. It was the most abusive, violent thing. I remember watching the plastic pump cup she was waving in her fist because I thought it was going to fly off into my face.
She just started screaming that I had not right to her pity. I had no right to be sad. I had no right to be there. This hospital was for sick babies. Full term babies are not "sick" so how dare I insult her by being worried about my daughter's surgery.
It was surreal.
I was in the middle of her firestorm and I thought "Lady, we are in a locked NICU unit on the 7th floor of Children's National Hospital. This is a feeder hospital. There are only 40 beds in this unit. Just by standing here, in this room, I have one of the 40 sickest newborns in the greater Washington D. C. Metro Area. I'm not arguing that your daughter medical prognosis might be worse than mine, but let me have the emotional space to process my own feelings about my own cross."
So I don't know.
When someone says "a conversation about your own suffering insults me because I have it so much worse than you"-- I don't think "insult' is the right word. Insult implies 'intent" and "abusive language."
This idea of "no one has a right to be sad unless they suffer X, Y, and Z" is dangerous because it's isolating. I see that happening with my daughter's friend, Emma. Her parents have the worse nightmare. A totally healthy, happy four year old got into a car accident on Christmas Eve. Now her brain damage is so severe that we're jumping for joy on her Facebook page when she starts to lick a lollipop.
So instead of "rationing" care and compassion for when it quote is "truly needed". People, good people, get freaked out and say "I can't relate". Because who can relate? What other parent has that dramatic a cross to carry themselves? So when the bad situation really comes, good Christians can sort of go into paralysis. "What can I possible say, they have it so much worse than me?"
The opposite approach is what I call "the generosity of spirit." When you suffer from your child's sickness, your compassion for other's lighter crosses can actually increase (through the gift of the Holy Spirit) I've received that gift so often from others. Tharen is a good example. My friend, Carla is another.
In the NICU, a few days later after the verbal assault in the Mother's Pumping Room--I received a beautiful gift of charity.
There was also a Muslim Mother who's first language was not English. Her son had a really dramatic problem. One night I was worn out after Tess had a bad day and I fell asleep in the parent lounge instead of her NICU room. I woke up and the woman was tucking her shawl around me. I started to talk to her out of guilt. "Oh I'm fine, you have it so much worse than me and look at you, you're holding up just fine." She just firmly tucked me back into my chair with her pretty shawl. She couldn't really explain to me her thoughts in English, so she just showed me feelings with her hands.
In the NICU, a few days later after the verbal assault in the Mother's Pumping Room--I received a beautiful gift of charity.
There was also a Muslim Mother who's first language was not English. Her son had a really dramatic problem. One night I was worn out after Tess had a bad day and I fell asleep in the parent lounge instead of her NICU room. I woke up and the woman was tucking her shawl around me. I started to talk to her out of guilt. "Oh I'm fine, you have it so much worse than me and look at you, you're holding up just fine." She just firmly tucked me back into my chair with her pretty shawl. She couldn't really explain to me her thoughts in English, so she just showed me feelings with her hands.
She told me with her eyes and her firm hands and her gentle blanket "it's okay to fall apart. It's okay to be sad and scared. This NICU journey is hard on all of us. We don't have to feel guilt for crying about our children among each other."
Her only English words to me in that tender moment were "No!' And "Sleep!"
And I followed her command. I went back to sleep. When I woke up, I felt better. I folded her pretty shawl up neatly in my hands and I felt loved.
