July 13, 2017 | Shez
Winter was approaching and the nights were getting colder. I’d just finished watching a video about acid reflux symptoms in babies and tears started streaming down my face. I didn’t know it yet, but I was about to have the longest winter of my life.
I don’t know why it seems so unnatural to go through suffering. There seems to be this deep unshakeable sense within us that we weren’t made to suffer and despite living and breathing in our broken and fractured world, it still comes as such a shock when suffering knocks on our door. And for me – it wasn’t just shock that came with this season, it was a crippling fear.
So there I was, sitting in our grey armchair, the waterfall of emotions running down my face. Two weeks of watching our newborn scream in pain felt like an eternity. I knew I was on the brink of a tough season and I just wasn’t up for it to be honest. I replayed my hardest moments, the days when I was seriously ready to throw in the towel and I couldn’t imagine enduring them potentially long-term.
I can’t do this.
“Yes you can Shez. God will give you strength,” said my ever encouraging-believing-hoping husband.
No seriously, I’m not cut out for it. I can’t do this for another year. I can’t even do another day. I’m so un-resilient. I can’t do it, I whispered between sobs.
He held me for a long time and my waterfall eventually ran dry. I crawled into bed, exhausted, defeated, afraid.
The weeks that followed did get tougher. We realised there was a more serious underlying problem in Eden during a visit to Emergency when she had been having chest retractions and struggling to breathe. The words of our GP after we’d asked about her noisy breathing were ringing in my ears while we waited,
“Oh that’s normal, all babies do that”.
My first beautiful moment came when our junior-doctor walked in to discuss the symptoms. Immediately I realised I knew this girl...Shani. I’d been her camp leader on Sailing Camp about 8 years ago. Her sweet, kind nature and gentle countenance calmed me and I was reminded that God works in all things for the good of those who love Him.
The paediatrician soon reviewed her symptoms and the monitors she was hooked up to, and stated,
“Yes, it’s definitely laryngomalacia”
I held a tiny girl in her fluffy, mint blanket, trying to take in the situation.
“Oh, it’s basically just a floppy larynx, she’ll probably grow out of it in about 6 months”.
We left the hospital that day with more questions than answers. I tried to find more information about this mystery condition and wanted to dismiss what I read on a support site - “having a baby with laryngomalacia will be the hardest journey of your life”. The more I learned, the more I sensed that it would be more than just watching Eden grow out of her condition.
Soon, she began to have feeding troubles. Her suck-swallow-breathe reflex was compromised greatly and eventually she wasn’t able to breastfeed at all. Even a bottle-feed every 3 hours was a huge undertaking. Being unable to breathe whilst drinking is a problem for a baby. Getting reflux, which inflamed the throat further, was a huge problem for our girl.
Her breathing continued to decline, so much so that we noticed her beginning to look blue at times. At that point, we’d seen two GPs, a lactation consultant, an ENT (ear, nose, throat specialist) who stuck a tiny camera down her nose and throat (that was traumatic) and none of their solutions were floating my boat.
We finally ended up in an appointment with the ENT “Godfather” as he was dubbed in the medical community. This beautiful old man, 86 years old, about to retire, took one look at our baby and said “let’s get her in for surgery”. Strangely, those words were like life to my soul. What I’d been holding out for. A solution.
They placed us on a Category 1 at Princess Margaret Children’s Hospital and we waited for the call. Ross was on school holidays and we were over the moon when we got the news that they could do the surgery within a week, and before he went back to work. Those few days and nights were long but our lovely (very Aussie) surgeon’s words ran over in my mind “Now look darling, if sh*t hits the fan before surgery day, just come straight into ED and we’ll do it on the spot”. We prayed that we she would make it and she did.
The morning was dark and cold and peaceful. I expressed and gave Eden one last bottle before her long day of no feeds. We carried our 2-year-old out to the car still in his PJ’s, clicked in the capsule and loaded our hospital bags. After dropping Harper off at my parents’ house at 5:30am we were on the road.
And that’s when I started realizing. The peace. The calm. The joy in the midst of this big, hard moment. God’s thick presence, his loving-kindness washing over me each and every second that I breathed in the experience. The uncertainty of how it would turn out being overwhelmed by the certainty of His love and care for our family. My trust in this good Father was getting the chance to soar to new heights. And I drank it in.
The hospital procedures were covered in a tangible grace and strength. As the team of doctors approached us to take Eden away to theatre I saw a young woman that I knew – I couldn’t believe my eyes. Shani. Again. Her prac at our local hospital finished up a week earlier and she moved onto the surgery ward at PMH. Eight other surgeries she could have been assigned to that morning and she was assigned to Eden’s. My heart was flooded with confidence and peace. He knew exactly what I needed.
For the next hour we waited in the Parent’s Lounge – the room was heavy. All these men and women waiting, hoping, praying that their child would be ok. It was a bizarre kind of gathering…nobody really talked much, but we all had this sort of affinity that we were in it together and knew what it felt like. I had a moment where I felt the pain of others in the room that obviously didn’t sense a divine peace or strength and I prayed for them.
Before long, our charismatic, fast-paced and kind-hearted surgeon entered and walked straight over to us.
“She’s all done darling! She’s doing great! The surgery was a success and she’s already in recovery.”
We were so grateful and breathed a sigh of relief. Only one person could go to recovery and then escort her to the ward so I decided to go.
I walked in the recovery room of about 12 children - all asleep after surgery, the only sound was the monitors rhythmically beeping. I walked past the beds until I found our tiny patient, on this gigantic bed, only covering the space where the pillow goes.
“She’s breathing on her own” the nurse told me. My heart nearly exploded with all the big feelings of relief, joy, heart-break and love for my girl. I was so proud of her and so glad that she was too small to feel the weight of it like I did.
We wheeled her up to the ward as she slept and Shani told me all about the surgery and how sweet she was, smiling as she went off to sleep. When we arrived at the ward there were 3 other beds in our high-dependency room. She was supposed to go to NICU because of her age (11 weeks), but our surgeon let us off as she was only a week off being old enough for this ward.
The nurse instructed me to pick her up and transfer her to her hospital cot, and I nervously slid my arms under her motionless body, so scared to wake her up. Much to my dismay she did wake, and I immediately knew we’d entered the intense part of the experience.
She opened her eyes. And she screamed. And as she screamed, she felt the pain of the open wound in her throat. She screamed like I’d never seen her scream. And she felt the hunger of 8 hours without milk. The whole floor would have heard her. The other parents in the room sat silently watching, not knowing how to help. Tears started streaming down my face – I was alone holding her in my arms, Ross still waiting in the Parent’s room. Shani kindly offered to go and bring him up to the ward.
He rushed through the door, put his arms around me and then scooped her up. And I just sat down on the bed and sobbed. The agony of seeing your child distressed by their pain and being powerless to do anything is something from another planet. I can’t describe it – it still brings me to tears. And yet I’m so aware that it was just a glimpse of what so many families experience.
In the hours that followed we were able to get her on some pain relief greater than just panadol (!!), and fed her some milk via syringe. And she eventually calmed. And began to smile. My love for her grew so much seeing her resilience and joy in the midst of pain.
The ward was quiet that night and Ross kissed me goodbye as I settled down in my leathery armchair next to her cot to try and get some sleep. She did exceptionally well and was even able to breastfeed a bit. I was onto round 7 of cold/flu since she was born which had added to the struggle of that season, and I grinned at the nurse when she looked over to see me with 2 tissues stuffed up my nose to stop it from running.
I just had this thought, “This is so random, how did I get here? This is not what I expected - but I’m actually ok. Thanks Lord.”
The next morning our surgeon came to check in and see how she was going and he was surprised and impressed with her progress – so much so that he sent us home. We were glad, relieved and exhausted.
During the next 24 hours at home, she sadly began to deteriorate and we were worried that she was aspirating (inhaling fluids during feeding which is a common problem with LM babies especially after surgery, and very serious too). So it was back to the hospital through ED. After my all-nighter at hospital I was really quite sick, and so Ross offered to stay with her so I could go home and get some sleep. This guy, I tell ya. He blows my mind.
As I drove home that night, alone, unsure of how things would turn out, God’s presence filled my car and it brought me to tears. His joy overcame my fears, his peace silenced my sorrow. He was enough to cover my suffering, in a way that I’d never experienced.
So this is what I was afraid of? This is what I thought I couldn’t bear? This is the monster that I’d been fearing all this time?
I smiled because God had given me the key to overcoming my fear of suffering. God had graced me with a gift of resilience, an unshakeable peace in the midst of trial. In the moment that I should have felt alone, afraid and discouraged, I didn’t feel those things at all. I felt God.
My heart swelled with love and trust for my Father who was greater. Who wasn’t overwhelmed by the brokenness of the world. His Word was coming to life in me, the truth of John 1:5 permeated my spirit. “The light shines in the darkness and the darkness has not overcome it”. His grace was sufficient for me, his power was made perfect in my weakness (2 Corinthians 12:9). As I drove, his presence was healing me, not just from this season but from my fear of suffering.
We received good news the next day, that Eden was unlikely to be suffering from aspiration but more probably a viral infection. They ran some tests and sent us home with instructions to come back in if we had more concerns.
Four weeks of swelling in her larynx, we were uncertain of whether her breathing would be fixed, but our home was filled with peace. When the swelling subsided, our little joy-filled “happy-struggler” as we used to call her became a new baby. A whole and healthy baby who didn’t squeak as she inhaled, who didn’t go blue anymore. Our girl was healed.
A year ago today, we took our baby in for surgery and the wife, mother and woman I am today is because of that season of suffering. God’s heart is not for us to have suffering, sickness or pain – I know this is the truth because when Jesus taught us how to pray, he said “your Kingdom come, your will be done, on Earth as it is in Heaven” (Matthew 6:10). His will is that Heaven would come and invade Earth and heal our brokenness, because in Heaven there is no suffering. Yet his loving-kindness refuses to let our suffering be in vain and “in all things, God works for the good of those who love him” (Romans 8:28).
The joy, freedom from fear, peace and resilience that Jesus won on the Cross has invaded my life and I am so grateful. Today I celebrate the beautiful gifts that God gave me a year ago – they haven’t faded away or become obsolete, they haven’t been forgotten. Instead, they have renewed my mind in this way. He has renewed my mind and set me free from fear of suffering.
My longest winter paved the way for my most beautiful summer.
Thank you Jesus. Your love is enough.