In January of 2020, before covid and the various off shoots of covid were public, Maxwell was hospitalized with a “strange illness”.

At home it appeared as if he may have the flu. I consulted my APRN bff constantly (appreciate you so much Meg) and she agreed that he should be seen and swabbed. Being this was a weekend, we had a little bit of a wait at the urgent care clinic. Once inside the exam room, the doctor saw Max and gently told me to get him to the emergency room. He was lethargic, difficult to wake up, droopy, and “out of it”. All of which we thought were flu symptoms. Cue the high fever.

I secure him in the car and begin to make my way to Hartford. I am talking with him and he goes silent. I look in the back and did he pass out or fall asleep? I am unsure. I know this is escalating into an emergency. I called 911 and my call was answered by my co-worker.

“Vernon emergency….”

“Joanne, its me, Melissa. I’m pulling in with Max and he passed out. I don’t know what’s wrong, but I need an ambulance”.

As I turned the nose of the car into the front parking lot of the police department, multiple uniformed officers swarmed us. Recognizing this as an emergency, the officers helped me get him out of the car and get oxygen on his face. I did not have any time to be scared.

The ambulance arrives and Max is taken to Connecticut Children’s, a place we are very familiar with at this point. As soon as we get into the emergency room, medical staff are with Max and immediately suspect he is very sick with sepsis. STAT blood work, emergent fluids being rushed into him, test for the flu, rsv, strep, the list continues. Every test returns negative, with the exception of the blood work which shows that Max is really sick.

He is admitted with high inflammatory markers and blood work indicative of an illness. Max’s fever is controlled but his body is processing the sickness and without anyone really knowing what was happening, they were guessing. Infectious disease and the entire staff of the children’s hospital who saw and worked with my son determined that he “must have had scarlet fever with a false negative strep test”.

When the research started coming out about kids with covid, I called all the places to see if anyone wanted Max’s story. I retrieved his hospital records from this stay, willing to give all of it to anyone who was looking into how covid was affecting children and the idea that variants were present earlier than reported. The Department of Health, CDC, local offices that were tracking covid outbreaks. I was literally yelling, “I HAVE FREE MEDICAL RESEARCH FOR ANYONE WHO WANTS IT!!” Crickets.

The situation begs the question, would the researchers have been interested in the information if Maxwell’s health had declined? In 2021, he qualified for and received the covid antibodies for at risk children. I’m not a scientist but treating a child with the same symptoms as the pediatric inflammatory disease who then had positive results from the antibodies seems like an interesting read.

The pandemic was a difficult time for the entire human population. Surviving a global pandemic is no joke and although the distance between our villages have changed, we would not have survived it without the people we rode those waves with. We parented, educated, entertained, diagnosed, protected, took care of, and survived it together. There will always be a special place in my heart for the friendship that carried us through that time of life.

During this time, Maxwell is showing more signs that he is struggling with routine and transition. We have been questioning autism for some time and he qualified for in-home autism services. That were on zoom.

For a three year old.

Zoom.

You can imagine how that turned out.

My life was changing drastically during this time because now “cancer” and my dad were being used in the same sentence.

Remember way back in part one or two of Max’s story we discussed my responsibility in thickening his liquids? The shit show that created turned into is a post in and of itself. However, we had to thicken all of Max’s liquids for school. He could not even have a popsicle without it being a big deal. Everyday we packed him this thick, syrupy juice and water combination that he absolutely loved. He did not know any different. Thickened water is gross so Max always drank a water and juice combination.

This is when survival mode was at one of its peaks. Traveling back and forth from South Carolina to be with my dad in his final days, working, caring for Max, my siblings, my own grief; at the time it felt like barely surviving. Ian and I were building walls constructed of silence and resentment, sealing each brick with cement.

Max’s diagnoses taper off to status quo and we are starting to spread out the frequency of appointments. And then grief brain ran the console for a while and we lost track of all kinds of appointments. I was using “band-aids for bullet holes”, hovering on the brink of the cliff.

I/we are incredibly grateful that during the time I could not handle it, nothing new changed with Maxwell, medically. However his inflexibility was consistently becoming more and more of an issue.