“Stop Protecting Cayden.”

It’s been two years of extreme vigilance to avoid Cayden (or us) catching Covid.

Two years of barely seeing anyone. Two years of hospital appointments, risk assessments, health checks. There’s been GA’s and surgery.

With Cayden’s level of daily needs and our stress levels we recently qualified for high level medical respite, where Cayden was looked after by trained nurses. He wasn’t allowed to go if he had even a runny nose. As a result, I kept him home even more and was even more cautious around where I took him. Getting a break was so critical I thought it worth any residual cost.

Which was great, until…

Cayden caught covid. From them.

The irony couldn’t have hit home more. One of the few times I gave my son into someone else’s care so I could get a break, instead morphed into a household of sick people, myself included. I spent two years of making sure Covid didn’t breach my door, and yet respite let it in.

Mere days before this happened, I was home and revelling in the fact that my household were well for once. I appreciated being tucked up for winter, aware that while Covid, flu and RSV raged outside, it hadn’t penetrated my cosy haven.

Oh, the irony.

That doesn’t go to say that my mental health was in a good position. On the contrary, the years of hypervigilance, risk assessment, isolation and protection had taken a toll of its own. I had finally given in and gone to a doctor who said I was about to break from all of the stress load on me. Other doctors had already told me that my daily load in working with all of Cayden’s areas of needs had me doing the equivalent of three nurses full time jobs.

Around that time, God whispered to me in amongst my daily busyness, “Stop protecting Cayden”.

Intoxicating words. Frustrating words. Confusing words.

“Stop protecting Cayden.” Those three words were so simple, and they seemed to promise a life different from the one I lived. A life where I didn’t constantly sacrifice my own needs or the needs of the rest of my family in the name of protecting Cayden’s health. Fear jostled for its own voice though, reminding me the whole *reason* we protected Cayden was so that he didn’t get sick and send us back to hospital. By not protecting him, would we just arrive at the same undesired outcome?

Changing my decisions daily according to the risk of exposure to Covid or other bugs had become so embedded internally I found it almost impossible to put those words into practice. If I chose to take Cayden to an outdoor playground and I saw one other child there with a cough who came close, we were out of there. If I tested the waters of a mainly music group and I heard a sniffle or a cough, I spun on my heels and packed us both back up to the car before we’d barely even passed the doorway. Risking an outing to an indoor swimming pool for the first time in two years meant packing bags the night before, rolling out of bed early in the morning and piling straight into the car while my husband fed Cayden a bottle of meal replacement pediasure as I hit the motorway and Luke snacked on his breakfast in his carseat. All so that we could arrive at our destination soon after opening, on a public holiday when it was one of the quietest days of the year. Trust me, I had rung ahead and asked. I knew when the risk was lowest.

The joy and delight on my children’s faces as they played and splashed almost outweighed my desire to keep my black face mask on emblazoned “heart kids” – a big, black warning sign for nobody else to come close. I had a *fragile medical child* with me! As soon as the pools got busier and I could not socially distance as easily, I apologised to my children and bundled them up in towels out of the water.

I hoped all of these carefully laid safety nets may just get us through another winter covid free.

That is, until Covid jumped over every hurdle and curled around every corner until it found my one spot of weakness. Respite.

It’s hard to say how I felt when I was notified of a positive case at the same time Cayden was present at respite. Let’s just say my feelings would not equate to “polite language”. I was incredibly frustrated. I hoped we may yet dodge the bullet, but that was not to be. Days later, Cayden became symptomatic and tested positive.

Quantifying stress levels at times is challenging. Should I say mine were stratospheric?

My cousin put it beautifully. “You are facing what you have most feared in two years, Karen.”

Hmm. Yes, that about covered it.

And suddenly, the world looked different. Instead of battening down the hatches of our home to keep Covid OUT, we were now battening down the hatches and isolating at home to keep Covid IN!

I said to my husband, “Why choose not to go somewhere in future because we might catch covid – WHEN WE’VE ALREADY GOT IT?”

Surely it was time to change our approach. A wise friend pointed out to me, “Karen if you keep Cayden home any longer, you will disable him.”

Cayden’s neurologist put it this way – “Neurological impairment with social skills and language development. However extremely good in his gross motor and fine motor skills.”

I think God knew that I was not going to change my ways. I couldn’t stop innately protecting Cayden because it was all I had known since shortly after his conception.

I’m grateful Cayden didn’t catch Covid on my watch. In a weird way I’m glad he caught it from a medical facility and not because of a choice I made to take him somewhere. But I can no longer justify the decision to keep him home to protect his health, if it is contributing to neurological impairment in other areas of his life and wellbeing.

One thing I am sure of; God is wanting to use this situation to open up our eyes and to start living our purpose again. At this point in time, I have no idea (whatsoever) what that looks like. But limiting Cayden’s exposure and outings to protect him I think must become a thing of the past.

Now, as soon as we come out of our isolation period (and get well) I can start to work out what that looks like…

Here’s to a different future. Fingers crossed.