Tell Them We're Survivors!

There’s been a recent theme in my thoughts of having several different entryways to my writing. I’ve either felt unable to blend them well or feel like I can’t land exactly where I want with just one. You’ll see this again in my next post for sure. 

For this one, I could start with the lyrics to Honor’s favorite Cars song. “There's no load I can't hold; A road so rough, this I know; I'll be there when the light comes in; Just tell 'em we're SURVIVORS!” - Life is A Highway. I’ve been reminded this week that Jesus understands rough roads since He’s been where I am, and He has been and is singing these lyrics over my family and me. 

I could head in from the moment I remembered that I hadn’t finished Howard John Wesley’s sermon from Sunday, so I went back, playing it from Honor’s iPad in his hospital room while he rested on me. A sermon from an Advent series titled, “Great Expectations!” And just as my child’s fever was unexpectedly rising, Wesley screams through the screen (paraphrasing here), “Don’t question IF God will do it, TRUST that He can, He will, and He already has.” Copy. 

I could begin with the highlight of our Acts Church family scheduling a prayer call for our baby after we had to cancel our first Christmas dinner. The blessing of how they came together, most of them still getting to know each other, and got on Zoom on behalf of Honor. The blessing of the confirmation of prayer as one of our values and these beautiful people carrying out that value. What love. What trust. What hope. 

I’ll simply start and end here: God is good. 

Honor caught a common cold earlier this month, he tested negative for covid the day after his runny nose, cough and sneezing began - that was a great relief. 

As his cold began to resolve, so we thought, he got more sweaty during his naps and at night, and he broke out into a full body of bumps over a few days. He didn’t have a fever and two doctors confirmed the bumps were just healing from the virus. 

The sweats did turn to fever and bumps turned to a flakey rash. With his dry skin and resolving cold, I didn’t think much of it. I started to think MUCH of it when within a day or two, both his eyes turned red, he stopped eating, he complained about his hands hurting, and he was irritable when we would change his pamper. 

We took him to the pediatrician Monday afternoon, she looked at him, she looked at me and she said “I’m sending you to the ER. Go to a pediatric ER because they’ll be more familiar with what I think he may have - Kawasaki disease.” 

*Googles as she talks* - rare (Honor is 2/2 on rarities now 🙄); treatable and curable (great!) 

So, to the ER we went. The suggestion was Maria Fareri, but the reviews gave absolutely not. I looked up the closest pediatric ERs and it was Montefiore Children’s - Honor was born at Monte/Einstein, so I felt comfortable going there. For much more than a split second, I considered going home, packing us up, and driving to Children’s Hospital of Philadelphia (CHOP), where he was best cared for with his CCAM (lung mass) and where he had the surgery to remove it. 

I talked myself down. It was a real argument in my brain. 

In the midst of Omicron, 8 months pregnant, only one parent allowed to stay with the child, on Christmas week, we got checked in and, much quicker than I expected, got a bed next to the doctor’s station in the ER. As if my anxiety wasn’t through the roof, the ER exacerbated it beyond explanation. “It could be Kawasaki. It could be MIS-C. It could be strep. It could be adenovirus.” “Mom, can you hold his top half down? We’re going to take blood.” “Can we ask you lots of questions? When did this start? When did that start?” 

Figure out what’s wrong with my kid. Treat it. And, do it now. 

He was admitted around 5 AM on Tuesday. My fantastic husband forced me to go home and sleep, so he did the first night shift and I was back shortly after he was admitted. Another day of confusion when the pediatric, infectious disease, and cardiac teams all had to weigh in on whether or not it was Kawasaki and most importantly, whether or not to treat it. The divided decision came back Tuesday afternoon that they would treat him to maintain his normal heart scans (thank God!) 

After a long Tuesday night of him being attached to an IV unable to get comfortable,  a long Wednesday morning of him being lethargic, still screaming about his genital area, being woken up by necessary vitals and meds, and rashes still rashing - his fever spiked again. 

& back into my spiral I went. I have a very sarcastic sense of humor and I’m quite the same way with God. I looked down at Honor and I looked up at God and I said, “You’re playing with me, right?” My meme of the week was absolutely… 

So many things were on our side: a resilient kid, support from grandparents who took night shifts, texts from family and friends who pray, doctors and nurses who were kind and thorough, Google for when those doctors and nurses weren’t giving me updates fast enough, family in the medical field, a disease that had a treatment that was active and available, and God Himself. 

But, in times like these it’s quick to feel like, and only think that, nothing is - an hours-long countdown to a toddler’s first Christmas that he can kind of understand and be excited about, the quickly, heavily growing baby inside of me who makes movement difficult, covid and the 30% spike in cases in that very hospital from the time we got there, and now a recurring fever that could dramatically extend our time here. 

By Thursday morning, Honor was Honor. I almost forgot him as himself. He was talking SO much, laughing, dancing, singing, yelling, playing, and bossing me around. His face was much less flakey. His body looked almost normal with good moisture. His eyes were white again. His hands were their regular size. Diaper changes were easy. Food wasn’t nasty or refused anymore. 

I believe in God, and if I didn’t before, I certainly believe in modern medicine (with appropriately understood and applied minority population historical exceptions, of course…#vaxedthough). 

Honor was discharged on Christmas Eve Eve and came home with a smile on his face and a dance in his feet - same kid, same. 

I’ve been forced to feel like Mary thrice in his season. First, through the anticipation of carrying a new child who’s unknown to you and the world with the potential for so much light and goodness, and feeling unworthy or unequipped to follow through on forming them. Second, the anxiety and fright of a lost (unhealthy, runaway, scared, disappointed) child, there’s no more paralyzing feeling than not knowing what’s going on with your kid. Third, when he came back to life and I remembered the promise of a child who God undoubtedly is with. 

Life is indeed a highway. I can trust Jesus because He’s been down the road of pain and suffering before, He’s also done it for Honor before, so this is not unchartered territory to Him and shouldn’t be to me. Prayer works. And like I said before, very long story short, God is still, so, incredibly good.