I am not a person who likes medicine or medical interventions, despite the fact that I’ve spent a lot of time over the past 24 years in hospitals and doctors’ offices.
I spent the last 33 years of my life trying to figure out the most natural ways to parent and provide a healthy lifestyle for my family. We try to eat a variety of foods in as natural state as possible. Get outdoors and have fun. Balance is a key that I return to when life gets chaotic.
I pretty much vaccinated my kids according to the schedule that was recommended — canceling only if the kids were sick. When Johanna was diagnosed it was recommended that we skip the pertussis vaccine because of seizure risks. When one of the older kids was exposed to pertussis in college, the doctors vaccinated Jo to keep her safe.
We didn’t do many of the flu vaccines because we were homeschooling and the kids weren’t exposed to large groups of other children every day.
But we sure didn’t miss out on head lice. We battled that for three months one winter!
Like everyone else, our lives have changed dramatically in the last year. Thankfully, because my husband and I both work from home, we were able to protect Johanna from exposure by limiting our outside contacts and centering her activities at home and in online forums.
We always wear masks for the limited times we are out in public and spend most of our time outside when we are away from home. The one or two aides coming into the home also wear masks when they are working with Jo.
Our only indoor outing with Jo is on Sunday. We go to Mass on Sundays at two of our local Catholic churches which provide easy handicap access and allow us to sit socially distanced and in the front rows.
Despite hospitalizations and surgeries over Christmas, we have avoided all COVID exposures. As the vaccines were rolled out, I was concerned that Jo was still too fragile since her last surgeries. It turned out that we didn’t have to worry because the vaccines were hard to get anyway. I wondered if we could just wait for everyone else to get vaccinated, reach herd immunity, and then we could venture out into more public events as COVID starts to disappear.
But the more research I did, the more I realized while it was important for my husband and me to get the vaccine, it was most important for my daughter to be vaccinated.
A word about research: it’s important to look at opposing viewpoints to make an educated decision.
Raising a child with a rare disease has compelled me to learn to read articles and documents about medical interventions, neurology, genetics, and case studies by breaking them down — sometimes word by word — so that I can glean valuable information we need. It allows me to have intelligent conversations and a base of knowledge to discuss my concerns and options with doctors.
Doctors work for us to the degree that we are willing to work at advocating for ourselves and our loved ones. Caregiving and self-advocacy are hard work. Sickness and death are even harder.
I have a friend who has strong convictions about a lot of really important things — most of them are issues with which I agree. But the pandemic showed us that there were other areas where we disagree — in particular where public health strategies meets personal freedom.
We are good friends because we challenge each others’ viewpoints to make us think. She sends me information to read from sources I don’t always agree with and I have challenged her to go beyond reading the catchy headlines to make informed decisions.
I know Catholics who won’t get the vaccine because the research was developed on aborted fetal cell lines. I struggled with this too.
This article from the Vatican explains the position of the Congregation for the Doctrine of the Faith, which includes recommendations for the COVID vaccine.
It’s important to make a decision on actual scientific findings and not on opinions. The internet is brimming with both — for and against the vaccine.
For me, once I understood and agreed with the CDF’s position on these vaccines, I read more about mRNA research. Contrary to some popular opinions, it has been researched for over 10 years in vaccine developments.
It wasn’t created last year to change our DNA.
Since the pandemic began, I started following a Catholic pro-life scientist with many advanced degrees including microbiology and immunology. He’s a smart scientist and great writer with a sharp wit and a Brooklyn attitude who supports mitigation strategies including isolation, masks, social distancing and vaccines.
Though we’ve never met, his writing and practical explanations of complex virology and public health strategies in a pandemic have really helped me stay grounded in faith and science. You can follow his blog here. But you have to follow him on Facebook to get more of his practical wisdom and wit.
I’ve learned so much from this Facebook friend because he’s addressed all my concerns over the vaccines and more. His son is also on the spectrum, so he understands the concerns of parents of kids with special needs. His opinions are scientific, informed, and viewed through the lens of his Catholic faith.
I also listened to a doctor that I’ve been following for over 20 years, Dr. Mark Hyman, who is currently the head of Strategy and Innovation of the Cleveland Clinic Center for Functional Medicine. He believes that food and lifestyle are our first medicine.
Dr. Hyman has a great podcast called the Doctor’s Farmacy. His podcast on COVID was the final scientific push for me to get us all vaccinated.
But like every other decision in my life, especially when it comes to my daughter, Jo, I brought the vaccine concerns to prayer.
Specifically, I asked the Lord that if it was truly His will for us to get the vaccine, that He makes it safe, easy to schedule, and accessible for Johanna.
Four days later, my husband and I noticed streams of cars coming and going at the group home next to our house. It turned out that they were offering the vaccine for residents, workers, and volunteers.
We have a great relationship with the CEO at Rise Life Services as we work together to be good neighbors. We qualified as volunteers to receive the vaccine because of our past support and the pet therapy we will be offering at the day hab program starting this spring.
We received our first vaccine last week and are looking forward to receiving the second dose. It doesn’t get any safer, easier, and more accessible than going next door. Like a good neighbor, Rise Life Services was there.
God answers my prayers in such practical ways.
Today is February 28th, Rare Disease Day. For us who belong to the club, one no one wants to join, it’s a day to honor those who fight visible and invisible enemies which war against the human body.
These people, like my daughter, are valuable and precious human beings, full of life and dignity and worthy of our care and protection simply because they exist.
Public health strategies in times of a pandemic are both challenging and at times controversial. But nonetheless, it is important that we protect the vulnerable and respect free will. We can do both.
It’s my hope that COVID-19 will soon become a rare disease — a distant memory like the black and white faded pictures from the influenza pandemic of 1918.
Until then, we have a shot of hope. I’ll take it and thank God for His provision.
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