July 25, 2012

The Road Home

If you are new to our story, you can catch up here:
MB's Arrival
Emergency
Her Sickness & Diagnosis

Her Surgery
The Longest Week
Hitting a Wall, Rounding a Corner

By Sunday morning Mary Brooks had been in the hospital seven days.

I left to visit a despondent Mac, who'd woken up hourly in the night screaming. I couldn't drive fast enough between the places that held pieces of my heart. The comforts of home were lost on me but the hospital was torturous, too; there was nowhere I felt fully at ease.

Each of our children legitimately needed me, and I finally understood I needed them just as much. In the same place. Suddenly what had been stressful to me - a pile of unfolded laundry, a loud toddler, a needy newborn, a messy house - seemed absolutely picturesque. I wanted our life back.

In the hospital I could pretend that nothing else existed outside our 10x10 piece of the universe, but leaving the sterile, scrubbed and fluorescent peds floor made it clear: life is carrying on. People are going about their daily routines, blissfully unaware. Life-or-death situations playing out for hundreds of families within the hospital's walls, but someone on Facebook is still complaining about lukewarm Starbucks or standstill traffic. How many times had I been that person before?

I tried to blend into those 'normal' people as best I could and took Mac out for pancakes that morning. Carbs cure everything. Since he wasn't old enough to determine his love language, we just used mine: breakfast foods.

(True story: If I'm ever a bit blue, a nap, sweet tea or a fresh stack of pancakes are the best gifts you could give me. All three and I'm ready to face about anything.)
I'm puffy-eyed and smiling like a loon; he is not won over by my mania.
Mac looked like a forty-pound giant compared to his teeny-tiny sister, but he wasn't yet two and a half years old. He still needed the security and schedule of his old life, as did we all. Each day we were gone he seemed more and more baby-like, and we just didn't have much of ourselves to give him.

Unsurprisingly, Mac wasn't cheered by my steely perma-grin or coos over his every forlorn expression. I was forcing myself to project Pollyanna-level happiness to our lovesick boy, but he didn't want kisses. Like me, he just wanted his family back together. It was enough to put me off pancakes.

Added to that was my knowing Mary Brooks was taking her first ounces of milk just miles away. Any signs of GI tract trouble and we'd be in for a longer stay and significantly larger problems. The surgeons wouldn't spell out much besides that, and trying maniacally to engage Mac in everyday conversation kept my mind off those crucial ounces.

MB kept every bit down, so I left Mac wailing at our house post-pancakes and floored it to the hospital. The relief in her room was palpable, but the echo of her brother falling to pieces in his too-quiet bedroom rang in my ears.


A friend came to visit bearing sweet tea while Bradley ran home briefly, and I marveled at the simple mom things (swaddles, schedules, sleeping) we discussed. It was a welcome distraction from the thoughts I'd been wading through all week.

Then, after nine full days without a full meal, Mary Brooks was able to nurse again. No measuring, no bottles. I rejoiced at the ease and simplicity of that moment - the answer to more than a few fervent prayers. She took back to breastfeeding seamlessly, and thus I sidestepped every contingency plan I'd prepared. She snuggled into my arms and I felt equally calm and exultant. Finally feeding her was heaven for the both of us, for different reasons.

I promised never to groan about such a privilege, no matter how constant feedings felt or how 'busy' I was with other things when she needed to eat. Unlike many other commitments in my lifetime, I've held to that one.

After Bradley returned, we decided to attend an elder-led prayer service our church holds once or twice a year.  We'd always wanted to make it, but had never been able to do so; it's the one service without childcare offered. It seems ironic now, finally having the ability to leave our children, but for such an unexpected, unhappy reason. Nevertheless, we had more than enough to pray about, and we desired the company and comfort of other believers.

My mom stayed at our house with Mac and my dad came to sit with Mary Brooks. In all the days since her surgery, MB had never been without her parents; we took turns leaving. We felt it was worth the hour apart and tore ourselves away.

Mary Brooks' wires had gotten fewer by the day, so her Grandpa was overjoyed to hold her for the first time since she became sick. We left him, after a jumble of bottle-related instructions, staring googly-eyed at our little bean, calm and quiet for the first time in days. (Food has that effect on MB, a girl after my own heart.)

Pulling into the church parking lot, B and I both fought the urge to run, to hightail it back and pretend we'd never left. Surely everyone expecting us would have understood.


Just being near the church brought a lot to the surface, things there's no time to feel in the hubbub and heartache of a hospital room. (And heaven knows I'm far better prepared for an onslaught of emotion than my even-keeled husband.)

Opening the doors to the lobby, I took one deep breath, effectively gasping for air, and we followed a small group friend to the row saved for us. I pulled a box of tissues out of my purse and waved it about, attempting gallows humor. Turns out"laughter through tears" isn't just my favorite emotion - it's a beloved crutch.

What Bradley and I experienced in that time reflected exactly where we were. Torn down, shattered and still crumbling. Raw. Real. It was unlike any other hour of worship in my life.

I'd heard the phrase "come alongside" before, but I'd never lived it. We shuffled into that service of our own strength, but were both physically and emotionally supported by friends experiencing this week with us. We weren't the only ones broken, and that sense of being bound together overtook us.

I looked around, making eye contact and smiling weakly. I felt utterly empty inside. It amazed me, as our pastors talked about the many struggles and hurts in our congregation, to think that mine wasn't the only pain in the room. If I could just get through this, I thought, nothing could ever hurt again. It was delusional, but life seemed problem-less, even idyllic, outside of hospital halls. As we all know, that isn't true.


Our small group stayed for a bit of worship, then walked hand-in-hand outside the sanctuary. I'm crying, four months later, as I write this. I have never been so carried. So absolutely held up. We were gathered around, arms around one another - a kind of intimacy that typically makes me uncomfortable.

I'm a hug-and-runner. Let's get "close" and then retreat back to our quiet, private lives. Let's pretend like we let it all hang out but really hold the ugly bits back, the worst parts, the stuff best kept behind closed doors.

There were no doors that night. There were no reservations and no boundaries. I wept, truly wept, in public for the first time in my life. I didn't cover my face or turn my back. I only stopped to hear the prayers of our beloved friends crying as they spoke our daughter's name to her Creator.

I have known since their births that others were praying for our children; I've comprehended that intellectually without question. Hearing our child's name wept aloud as I stood, propped up against friend upon friend, brought home meaning of 'community' like no impassioned sermon ever could, though. I wasn't just in community; I was surviving because of it.

And then a minor miracle: I prayed in public. Aloud. Sobbing and hiccuping and shaking tidal waves of tears off of my face as I spoke. Not worrying about syntax or the "right"' things to say or if people thought I was "Christian" enough or if they saw right through me. The fears of two decades were drowned out by my need for community with other believers. Please don't make me walk through this alone. We can't do this, not for one single second, by ourselves.

I asked God to hold me together. I praised Him for keeping our girl alive and for the people who were taking care of her that very minute. I told Him I had prayed so passionately for a baby, that I knew she was the baby I had prayed for. That I hadn't wanted a miracle baby, just a normal, nothing-more-to-it story. I didn't want to be in this situation. I wanted OUT of it. There's nothing pretty about that sentiment, but I felt far more connected to Him then than when I have prayed with pretty platitudes.

I listened to people pray for needs I hadn't even anticipated myself. For our families, for Mac's tender heart, for our marriage, for Mary Brooks as she grew, that she'd learn her story and come to know the Lord at a young age because of it. That we would be drawn closer together and closer to God through this, and that we would ALL be healed.

Bradley and I have never experienced a sweeter time with other believers than when we were at our worst. As our group wrapped up its prayers, our internal alarm clocks were screeching. We said our goodbyes and left service both emptied out and filled up; it was equally cathartic and replenishing, exactly what we needed.

We called my mom and heard Mac crying in the background, begging for his dad and asking not to go to sleep. I dropped B off at home and rushed back to Mary Brooks before the new shift of nurses arrived.

I found Dad singing to Mary Brooks, rocking back and forth with his face just by her ear. I was told later he'd asked the nurses if they wanted to "look" at MB when he unwrapped her for a diaper change. Thinking he was worried about her incision or her wires, they assured him they didn't need to check a thing - she wouldn't be harmed by him. My dad said, "Oh, I know that. I meant - isn't she beautiful? Don't you want to look at her?"

Nurses relayed that story several times, as they'd never seen a grandfather left in charge of a patient's care. I love that my dad was the exception to that rule; it sums up his approach to (grand)parenting perfectly.

After Dad left, the three of us were spent. B caught a catnap snuggling with Mary Brooks and we took turns lying next to her in the crib, something we'd just found out we could do. It was the closest thing to cozy I could imagine in that room.

We had a relatively easy night; B even left for a bit Monday morning to check in at the office. Word had come in around dawn that, maybe just maybe, today would be the day. I couldn't bring myself to speak the words aloud, but I could have run the Boston Marathon on adrenaline alone.


Nurses and doctors filtered in and out; our surgeon went off call and an unfamiliar face checked in. Phone calls were made, messages exchanged and charts reviewed. A friend brought Chick-fil-A and I could barely swallow it for the butterflies in my stomach.

Mary Brooks was eating and calm, so no matter what the call was I knew I could survive another day. That had been our game plan all along - survive another day and don't look beyond it. Finally that tactic felt doable.

Our nurse pushed a few slow-to-respond residents for answers while I started packing, folding, sorting and pacing.

When the official word came in, our bags were already at the door. A nurse boxed up the "traveling dairy" she claimed I'd produced while MB was there. The only way to transport our things was a little red wagon, so B stacked it high and we got out of there so quickly I'm sure it was illegal.

All those days, all that waiting and praying and breath-holding. Then the elusive call comes down and we're just...gone?

I stopped to snap a picture of our room and hurried out before they thought better of things and readmitted us. It felt like pulling off a bank heist.

Homeward bound
Every time I'd played this moment out in my head, I fought back tears. I anticipated tears. A theatrical, heart-rending scene and some joyful hot-stepping out to our car. It wasn't that way at all.

We rode down the elevator in ecstatic silence, Mary Brooks sleeping in my arms. Bradley pulled the car around and before I knew it we were walking into our house, Mac's exclamations wafting over us like a chorus of angels.

My mom stayed to let us get a delicious nap, and then we were awake and alone, diving headlong into long-awaited "normal" life.



First up was a visit to the after-hours pediatrician to address an eye infection that seemed more pitiful-looking by the minute. What was a slightly puffy eye in her hospital crib became so swollen it couldn't open by suppertime. 

After that, and the ensuing pharmacy trip, we were home for days, doing only the bare minimum and surviving the home hurdles (yes, Anne, problems do exist outside of hospital walls) that kept coming our way.
Back to the doctor we go.
(A nurse told us before we were discharged that it could have been a side effect of having her eyes taped shut during surgery. The parents in us winced instinctively. We were blindsided by the thought of our girl on the table, anesthetized and strapped down, being cut open with her sweet, sad eyes taped closed. It was an image I fought for days. The surgery saved her life, but I'd have slept better without that last detail.)

For a while it was pure survival mode, just the meeting of basic physical needs and setting aside anything more challenging.


None of it mattered, though. We slipped under our own covers and slept (in little snippets) as though we were on a cloud. Our family, all four of us, lived under one messy, loud, disorganized roof. Praise God. Nothing had ever felt better.

March 12 began the rest of our recovery, the piecing back together of things. It was tougher than I'd anticipated, but I can handle just about anything in my own home. Mac and Mary Brooks both went through a great deal in the coming weeks, which I hope to record here for posterity's sake.

The miracle in the story is in more than Mary Brooks' healing. It's in me and Bradley, in our hearts and in the absolute change we have seen in our lives. In the way we saw the body of Christ come together and live out the Gospel before us. In the understanding of our real purpose here. In the power of being Jesus' hands and feet (or ears and shoulders) for troubled friends. In the lives of others who were affected by our experience and, Lord willing, in the spreading of awareness about intestinal malrotation.

I plan to talk soon about the practical ways we were helped and the best advice I can give to friends and families seeking to support loved ones during a crisis. That's one of the most tangible, immediate rewards of walking through this fire - learning what we can do when a family is in a similarly difficult time.

Later today I'll publish a brief (yes, I can do brief!) post touching on the signs and symptoms of MB's dangerous condition - what to know about it. The more medical professionals I speak with, the clearer it becomes that intestinal malrotation is unfamiliar to many even within their field.

That's devastating, because malrotation is deadly without surgical treatment, and it affects one in 500 newborns. It's a silent killer, and I am overcome by the desire to help other families avoid such heartbreak.

I am thankful every moment that our daughter survived, and am so grateful that you have graciously allowed me to record her story here. It's not over yet. Praise God - it's just beginning.

3 comments:

Amy said...

wow. i feel as though any comment i could leave would just be empty in comparison to what you've just written. i am for sure doing the "ugly cry" while reading, though. :)
what a beautiful story of the love of family, friends, and our God. He is Jehova Rapha (The Lord that Heals) healing hearts, relationships, bodies, and every hurt we could encounter. thank you for sharing your family's story. what an amazing testimony you have and Mary Brooks will have as well!

Samma said...

Anne, once again I am so glad you are sharing this. Those pictures of Mary Brooks in the hospital just shatter me.

StratPack said...

Raw, real, community, living a day at a time, treasuring nursing, being completely transformed because of tragedy, bonding over sweet, syrupy pancakes ... I can relate to so much and feel so incredibly moved by your story. What God brought MB through and how He changed you in the process is absolutely AMAZING. My heart is so uplifted by your words. Thank you for sharing. The best part is this is only the beginning for your family. I'm so excited about what God is doing!

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