On Disease & Suffering, Pt. II – Life In Constant Threat

Reflections on the age old question of how a good God can allow disease and suffering in this world. This will be part II in however many posts it takes for me to write about how God has responded to my questions over the last few years.

Initially, in that first year, I tried to power through. I know that God was trying to speak to me. Even in those first few weeks after our miscarriage, he had met me clearly and powerfully in some of the most intimate ways. I recall vividly, the way He imparted a specific verse I had never even heard of to me, Psalm 73:26, which read: “My flesh and my heart may fail, but God is the strength of my heart and my portion forever.” I recall the images and the corresponding Scriptural support He gave to my husband for me, of Jesus weeping with those He loved in grieving their loss. And I recall the loving friends He brought to surround us, that met our needs in just the right ways.

I tried to cling on to what I knew in my head. The “truths” I had learned in deeply personal ways over the course of my life about God. That He is good. That He is for me. That He is sovereign over all things. That He loves me. And initially, I thought we would end up OK. We held an intimate remembrance ceremony at our favorite spot on the beach in Santa Monica on New Years Eve for our little Baby June. Even at the ceremony, God showed up in the most personal way, as I had silently prayed for a sign like the feather I had read about in this beautiful story just a couple of weeks prior…and immediately after our ceremony, a little girl unknowingly ran up to me, saying “this is for you!”…and handed me a feather.

In the story I had read, the photographer regularly got “signs” from her late sister with feathers falling out of nowhere. And in her photoshoot of her brother-in-law and his daughter, honoring her sister’s memory, she was deeply touched when her niece bent down and picked up this feather during the shoot.
Imagine my utter disbelief when this little girl (our pastor’s daughter) ran up to me completely out of the blue and said, “This is for you.” No one knew the significance of that moment and why it broke me down until later.

People grieve in different ways. For me, I needed to feel like I had something tangible and a way to formally say goodbye, and to do it in my love language through creative expression down to the little details. The leaves and flowers here on the cover of the prayers we wrote are shaped like “lentils” as we had called her our little lentil, in line with the week-by-week “your baby is the size of” emails we had been getting.

But then the aftermath hit. And it was a wall.

As leaders in our church, I had to go on, week after week. We mentored people. We led Bible studies and community groups. We served on Sundays. We helped guide the church’s direction. And it was authentic. I did it because in my head, I still believed everything. I knew I couldn’t trust my emotions. In a way, I leaned more into my faith; after all, if faith is believing when you couldn’t see, well, I certainly couldn’t see anything. Because in no way could I make sense of how my God – who I firmly believed was a loving God who loves to heal, who loves me, who gives life – could allow for life to be taken away. I went on, but in some ways, it required me to completely shut down my broken heart.

We got pregnant only a few months later. But it was different this time around. It wasn’t met with an eruption of joy – only fear. In fact, the whole pregnancy was fraught with a sense of terror and dread, that something could happen at any time.

It didn’t help that at 11 weeks along, I opened what I thought was a birth announcement from a dear colleague, that turned out to be an obituary for their stillborn infant at 36 weeks.

Though I was able to share in her grief and support her, the hole in my heart grew deeper. Yet, I was afraid to be angry at God. I felt like I couldn’t afford it. I couldn’t afford the possibility that He might take this baby away from me a second time. But in a secret place locked away deep inside, I was completely, utterly broken.

Our baby was born on November 26. I cried uncontrollably when he came out. Not because it was the most amazing experience to finally meet him (it was), but mostly because I was relieved he was alive. And for a time, it seemed that all would finally be well again. I experienced a joy I never thought possible, like a gray world had transformed into one in full color. He was an absolute miracle. Life was a miracle. Even in the moments that were hard, I was in complete bliss; so grateful I was to have the gift of this beautiful baby.

I was not prepared when he had his first severe allergic reaction.

He was six months old, and we were just starting him on solids. He had done well on the rice cereal and his first couple of veggie purees, and he was ready to “graduate” to his next cereal. We were out of town, visiting my sister. I picked what looked like the healthiest option I could find, an organic multi-grain cereal labeled as the next step up from rice cereal. My good little eater eagerly ate each spoonful. When my brother-in-law noticed he was getting splotchy around his neck and ears, I dismissed it as his eczema. But before I knew it, it quickly spread to his whole face and overtook his entire body.

I snapped into emergency mode: “Oh my God – HE’S HAVING AN ALLERGIC REACTION.”

The next few hours were a blur. Rushing to the emergency room. Getting medication. Going under observation. Finally going home and having to continue to administer medication every few hours. It wasn’t until a full day later when the reaction finally subsided and he was peacefully sleeping that I broke down.

That was the beginning of our discovery of a whole new world we had no clue about. Our first visit to the allergist. Tons of needles and pricks and testing. A diagnosis that it wasn’t just a severe allergy to wheat, but multiple severe allergies, including eggs, peanuts, tree nuts, and most of all, dairy. That it was so severe he would react from merely just physically touching it, which we quickly learned. Grappling with navigating a world where commonplace foods – goldfish, crackers, peanut butter, cheese, yogurt, someone else’s baby bottle – became landmines and deadly poisons that we couldn’t rid from his external environment. It required an entirely new level of hyper-vigilance we had never known.

If this wasn’t enough, the unthinkable happened in our family a few months later. I will never forget the barrage of text messages that was so surreal that it felt completely unreal. An urgent call for everyone to pray, because our cousin’s five-year-old daughter was being rushed to the emergency room. The rapid succession of text updates that the parents were on their way, that she wasn’t responsive, to please please pray. And all too suddenly, before we could even wrap our minds around what was even happening, the unthinkable: “We lost her.”

Have you ever seen a child-sized coffin? It is one of those things that just look eerily bizarre, because it shouldn’t exist. Yet I’m sure more people than we would think of – too many people – have seen one. There is nothing that feels more wrong than the death of a child.

I wasn’t able to fully join in the heartfelt prayer gatherings the following weeks. It was admirable to see many people cling on to their faith, to press in to God, to hold on to His sovereignty or “plan”. I couldn’t do it. If God has a Father’s heart and loves us as His children, then I had a major problem with something like this being remotely part of his “plan”. I prayed for her parents. I did what I could to love on them. But I staunchly refused to let this go as any part of some master plan. Otherwise, what kind of God was I worshipping?

We were still reeling from this when we had our own emergency a few weeks later. I noticed the initial welts on my son’s legs that seemed abnormal. We took him in to urgent care. It was a per diem doctor who saw us that day. She didn’t tell us much, but decided to take some labs, but still sent us home as she said her slight suspicion of what it may be was rare so it likely wasn’t it, and he would be fine. But when we got home, I noticed the welts were rapidly spreading and my son started developing a fever. When Daniel got home, he realized that her slight suspicion, which she failed to act on, was actually the right diagnosis – an eczema complication that could be a life-threatening infection if not treated immediately.

When you need a miracle, you do pray. We were in emergency mode, so we did everything we could. Thankfully, we got the care we needed right away with some great doctors, and after a few days, were able to go to home.

There would also be another hospital visit before the end of the year, though for a small accident that wasn’t health-related. But needless to say, I was growing very weary, not merely from the physical toll it was having on us, but from the weight inside my heart.

To be continued:

Part III: The Breaking Point

Part IV: The Start of a New Narrative

Part V: God Begins To Speak

Part VI: Some Emerging Theology on Disease

Part VII: Some Conclusions (Though Always An Ongoing Work-In-Progress)


Part I: Losing Our First

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