“Guardian angel, pure and bright, guard me while I sleep tonight.”
The day I took my son home from the hospital, I sat crying in the waiting area of the neonatal intensive care unit. I knew this little corridor so well: the bright-colored wall filled with photos of NICU grads; the manila chairs that lined facing each other; the cabinet, the coffee machine; and those big glass doors.
Alarms had been sounding all day and my nerves were shot. We were getting a crash course in home oxygen, apnea monitors, and pulse oximeters. After 148 days of sitting in this same chair wishing, praying, hoping, longing to go home; today was the day, but was he ready? Were we?
I’ll never forget that afternoon, for a number of reasons obviously — the homecoming of your first child, born 4 months too soon is a monumental day — even bigger than his birthday… but it wasn’t that.
I texted one of the other NICU moms, “Will you pray with me?”
As close as we were, I’d never been so bold in my communication to her, so outward about my faith; so demanding. I sat there waiting, staring down out at my phone feeling silly for how desperate I felt. She didn’t respond, but that’s when it happened — Julia* walked in, sensed something was wrong and sat next to me.
I’d met Julia only a few weeks before. One of the NICU nurses asked if I’d speak to her, and give her some encouragement. When she introduced us, I didn’t know what to say but, the nurse prompted me, “tell her how long you’ve been here.”
“Well, it’s been 120 days.” Her face stunned, eyebrows raised, she suddenly stopped crying. I told her my son was born just 1 lb 12 ounces, he had a very slim chance at survival, but, you know, I was his mom and even though I’m new to this mom thing, I felt like it gave me strength … gave him strength.
I told her “I remember our scariest night in the NICU, when we didn’t know if he was going to make it. I was terrified, but I couldn’t – I wouldn’t – give up. Hard as it was, I set up camp at his bedside that night and didn’t leave until we were in the clear.”
I think Julia felt encouraged by my story. I told her, “I know it’s scary but you just stand your ground. You be here for her. You can do that.”
She opened up, told me she had a full-term pregnancy, everything was great, her delivery went well, but then suddenly something happened and they ended up here, in the NICU. They thought they’d be home in a day or two but there were still some things to work out; it should be a week, maybe two.
I was hopeful for Julia and really happy I made her acquaintance but I also walked away, silently dismissing her situation as very different (much better) than mine. For that reason, I tried to keep my distance over the next few weeks, but she was persistent, always coming by JR’s bed to check on us. She introduced me to her husband and mom, and before long, we were catching up daily.
Over the course of the next few weeks, things went downhill for Julia’s sweet baby girl. Doctors suspected she may have a rare genetic disorder wherein the lungs do not produce surfactant, a necessity for breathing… for life.
They’d run a million tests searching for answers and none had come back positive. I heard Julia was waiting for the test results to confirm this newest hypothesis. We were all very worried for her.
That week another mom and I ran into her — as we were walking into the NICU, she was walking out. She completely broke down in the hallway, “how do you do it? how do you live this day in and day out?”
We all cried together.
I felt like I was her — I, too, had cried similar hot tears in that hallway before, searching for answers from anyone, searching for a release from the pain and weight of it all. There was this one time someone stopped and asked if I was alright. No. I WAS NOT ALRIGHT.
That hallway was the worst.
Sometimes the NICU just overwhelms you like this — where you run out so full of sadness you could combust. It’s that kind of place. It’s just … hard. The babies have so much stacked against them and you, so much love for them.
The only relief was in those rare moments motherly bliss broke through — this beautiful, intimate, unexplainable bond that was bigger than what the babies looked like, what was “wrong” with them and the looming question as to whether they’d survive. Between that and the comradery shared among NICU moms gave you just enough energy to get by; to keep going back; to live this, day in and day out.
About a week before JR’s discharge I ran into Julia again — this time, in the family room. She was trying to eat a little something and I didn’t want to impose but she invited me to stay. I can’t remember exactly how we launched into the conversation but Julia told me everything that was going on with her precious girl— the mystery diagnosis, the possibility of a rare and deadly genetic disorder, and the painful wait to retrieve those test results.
I have to pause here and tell you that it’s been nothing short of an HONOR to have known Julia and her daughter, and to have been in that room, having this conversation with her.
Both our eyes welled with tears as she shoved her fork into the TV dinner, and blurted out just how truly terrible and scary this whole thing was. This pending news was crippling. It was a death sentence. It was terrifying and awful and agonizing; yet, Julia said, she had to keep her head up. She had to show up every day, and hold her baby — a blissful/surreal experience — and love her with all her heart even though SHE MIGHT LOSE HER.
Her saying that out loud.
She might lose her.
Us sitting there with that.
The rawness of this unreal reality — of precious life and death colliding before us, with no means to stop it despite all the will power and love and pleading possible.
It was gut-wrenching.
And I was just an onlooker. I was a listener. I wasn’t her mother.
But just seeing it and hearing it, knowing this has stuck with me since that day. I carry it, honoring it and the bravery and STRENTH of that woman … the true definition of ‘strong as a mother.’
I don’t know exactly when Julia got the test results, but it’s my suspicion that it was that day or the day after. It’s my understanding that they’d found specialized doctors in another NICU – at Philadelphia Children’s Hospital – who’d had experience with this rare disorder and the plan was to fly this sweet precious newborn there for help as soon as possible.
I can’t remember what I said to Julia that final day when she walked in. (This was after I’d sent the text pleading for some encouragement from another mom… )
I’m sure I fumbled my words, saying something about how crazy this whole discharge was; we both had silent contempt for the NICU (most moms do); I admitted I was nervous – no, terrified! – to bring JR home. I had waited so long for this day, unsuspecting that when it came, all the emotions would come with it.
Jokingly she said, “OK, what would a NICU nurse say? ‘Don’t worry, if it doesn’t work out, you can always bring him back.’
I smiled – the GALL! We HATED hearing that. “Or, or, how about, don’t stress, they can sense your stress.” Yes, yes, another completely ridiculous attempt to make a NICU mom feel “at ease” holding her baby whose lifeline is a flimsy piece of plastic hooked to a ventilator. Don’t panic, they sense that!
We both chuckled — those damn NICU nurses!
I turned to Julia, “thank you.”
She turned back: “You can do this – you got this!” she said. “Let’s go back in.”
When I returned to JR’s bed, tears filled my eyes again — this time with gratitude over the gracious way Julia had paused to sit with me, to make me laugh; to give me the courage to walk back in…
The one who’s son was leaving that very day.
We ran into Julia quite a bit more that afternoon – and at one point walked over to her sweet baby girl’s bed side to blow kisses and encourage them about the the pending plane ride to Philly, where they would sit down with doctors who’d seen this kind of thing before and discuss the possibility of a lung transplant, and sustainability in the meantime. It all sounded and felt so surreal. I must have hugged them ten million times. Tighter and tighter before we left.
I almost didn’t want to leave.
I wanted to see that sweet girl off into the sunset. I wanted them to have a happy ending too.
Hours passed – it was a total of 9 straight we spent at the hospital that last day before we were given the green light to walk out with JR. It felt slightly anticlimactic, nurses, and doctors going about their business during shift change…
As we packed up, my feelings shifted strongly to a sense of urgency: must. get. out. I was over this place. So over this place. READY.
Home preparation was no cake walk though: prescriptions and instructions and goodbyes. It was chaotic, which was so odd, since everything we’d ever known abut the NICU up into this point was its meticulous attention to details: Then suddenly this, us feeling thrown to the wind.
I think in that way, we do share something with regular parents. “We just take him home? Like, REALLY?”
When we finally got loaded into the car and drove off the carport I cried the entire drive home, an in-my-gut, thank-you-Jesus, i-can’t-believe-the-day-has-come cry.
The first few days home are a total blur now. I just remember standing over JR at night, unable to sleep — terrified to take my eyes off him — watching every breath. We called the NICU in a panic the first night, asking about something; I can’t even remember what now. We experimented with the best sleeping arrangements — tried a co-sleeper, the mamaroo and other contraptions.
Five days into our new life at home, I texted Julia because I couldn’t stop thinking about her and the fateful plane ride to Philly; the transplant; and how things were going.
My heart sank a million times over when she responded that her baby was an angel now, passing just two days after we left Georgetown. She said, “we’re heartbroken and trying to pick up the pieces and cherish every moment we had with her. It’s hard, even though we saw it coming, a parent is never ready to let go.”
A few weeks later we received the following note, written inside the cover page of a baby’s first bible.
“Dear Aaron and Sara,
Wishing you and your family, especially JR, many blessings for good health and serenity this Christmas season. We were so thankful to have met you both and witnessed your love for JR. We believe that in time he will be restored to complete health. Our hearts ache at the loss of our girl, and we pray she will guide our paths as we struggle to find our new path. Life sure blows sometimes, doesn’t it? We also want her to be remembered and we’d like to think that her spirit might be present in the moments that you read this book of prayers to little JR. Peace, light, love, and strength to all of you.”
On this five-year anniversary of the JR’s homecoming and our sweet friend Julia’s loss, I’m in awe of the way one tiny life has forever impacted mine. Not even a month old, and yet, the hearts she touched will be etched forever with her love and her mother’s strength, a guiding light on my motherhood journey.
Rest in peace.
You spirit is ever-present, little Sofia.