Faith Informed Action

In December, Stuart, Helena and I went to Dallas to see Helena’s neurologist. A few months earlier, we did whole genome sequencing to look for possible causes of her condition. After a long wait, the results were finally back.

Almost every person has some genetic mutations in their makeup. What is more rare is when those mutations work together to cause a medical condition like Helena’s.

Helena has a genetic mutation from both of us that contributes to her condition. This genetic condition can cause muscle weakness, contractures, and cardiomyopathy.

Based on this information, we visited a cardiologist in January. We had an EKG, and after the results were in, we were relieved to find out that Helena’s heart is fine for the moment. We will go back for a follow up in 2 years unless something new comes up.

No one can determine when cardiomyopathy will show up – just that it is a likely possibility to eventually occur based on this testing. Along with genes, external factors like illness can play a role in when this happens.

In February, Covid-19 started spreading in the US.

My husband had been watching information about this virus since December out of personal interest because of an early news story he heard. He has some experience working in the chemistry lab of a pharmaceutical company. He understands pretty well the potential harm a new virus can cause, and was a little concerned about this report.

I was more in a state of concerned denial. In February, I went to my work conference in San Antonio, mostly unconcerned about any sickness other than the flu. I had a rough bout of the flu or an illness similar to it in December. I didn’t want to feel like that again, so I avoided being in large crowds like the food court as much as possible. All of my sessions were packed with participants, as always. After I returned from my conference, I heard of a woman with this virus going through a San Antonio mall.

In March, we had planned to go to a car show that benefitted Scottish Rite Hospital. As the virus progressed, we thought it might not be a good idea to go. There were too many unknown factors about the virus, and seemed to be too many people traveling when they could avoid it. It still bothered me to hear that people were stocking up on groceries and supplies. By the end of our Spring Break, most schools and universities had closed and Stay at Home orders were being issued.

Our effort to follow the Stay at Home Order was mostly out of a proactive concern for our parents, and just a mild concern for Helena. After about a month of being home, however, I read a newsletter from an advocacy group for Helena’s condition discussing hydroxychloroquine, which was a hot topic at the time.

In this letter, two cardiologists were weighing in on the dangers of hydroxychloroquine. Both agreed that for high risk populations, (such as this genetic condition), this drug should not be used due to potential heart problems that outweigh the drug’s benefits.

So my curiosity was piqued. Was Helena actually considered high-risk because of this new diagnosis? We decided to check with her neurologist to make sure. We were not all that concerned, but didn’t want to be caught unaware.

The next day, I contacted her neurologist’s office and inquired about her status. The nurse responding to me didn’t seem too concerned, either. However – I when I got a message back, this was what the doctor said:

“The doctor has stated she is recommending all of her patients stay home from school until August.”

At that point, the Stay at Home order became more significant for our family. The more we researched her genetic results and considered all of the information we currently have about Helena’s condition, we knew that we would really need to continue social distancing for longer than others. Helena is doing very well right now, and we don’t want this to change because of poor choices.

I have been seeing a lot of people recently posting things about the Pandemic in social media like “Faith Over Fear.” I know that this sentiment is partially being shared because of the frustration with media coverage of the virus. However, it bothers me a lot when I read these posts.

I tend to weigh most decisions on my faith, and many people might even say I rely too heavily on my faith. My decisions regarding Helena’s condition are always made with a mixture of prayer and good information- which I believe God is providing to us through excellent doctors. One thing we do know – doctors do not always have all of the answers when it comes to rare conditions, and are many times dead wrong. Faith is required.

That being said, I believe this is not the best message that Christians could be sending out to the world right now. This virus is real – and at this point has killed over 477K people and infected over 9 million. We should be concerned and looking for ways to support those affected and at highest risk. We should be thinking about our own family members, and it is NOT fear to base decisions on the information we have.

At this time, I believe Christians should instead be promoting “Faith-Informed Action.”

In Proverbs 16:3, it says “Commit your works to the LORD, And your thoughts will be established.”

Christians should be seeking God’s Will through scripture and prayer for their own personal circumstances and for opportunities to serve those around them. Every person’s situation is unique and requires close examination.

Now that it is mid-June and Stay at Home Orders have been gradually lifted, people seem to be in this odd place – one where many are out and about, but others still need to remain cautious and stay home. There are valid concerns for those who need to be cautious. Where I am, the number of infections is starting to rise sharply again. Along with this, I see no consistency in the way social distancing is being handled.

How does someone go from staying at home – to safely social distancing? And what if someone works or needs to interact in the community with a high-risk family member at home? How are at-risk family members kept safe? Here are my thoughts:

1. Set your family goals based on the needs of its members.

Our family’s plan is to stay at home as much as possible until we have to go back to work on site. When out, we will continue to social distance. For us, there is no reason not to continue social distancing right now – and Helena deserves our protection. It is our job as parents to set in practice the best way to keep family members healthy. Others may not have these risks and that is fine. We do- and we should be taking them seriously.

2. Showing kindness and empathy to everyone.

I am sure there are many who are having to return to work or have been working as essential employees who are vulnerable to sickness or have to work in high risk areas. There are many who have lost jobs or have had other difficulties during this time.

Every one of us have been dealt a situation that is unprecedented in history during our lifetimes. We should be slow to speak, slow to get angry, and quick to listen. And if we can meet a need – we should try to be supportive and help in ways we are able.

What we should not do: dismiss others’ concerns as wrong because they are not our own concerns.

3. Be open to being vulnerable, yet remain strong.

Anyone who truly knows Helena knows this – she is fiercely independent. Our main arguments with Helena tend to be over her desire for independence and how that desire collides with our understanding of her vulnerabilities. We don’t limit her much physically – but often we have to set boundaries when it comes to behavior and safety.

To state that we are staying home “out of fear” is absolutely wrong. Helena needs to continue to stay home because that is what is best for her at this time. We need to support her by doing this while we are able to do so.

The past few weeks have been difficult for me personally in terms of seeing the differences in philosophy on the handling of Covid-19. I have been especially guarded about discussing our family’s situation because of prevailing opinions in my area over the seriousness of the Pandemic. It has made me sad to disappoint a number of people I care about by having a differing viewpoint. There is a lot of unkindness in this world right now. There also seems to be little tolerance for differing beliefs – or even just being different.

The Covid-19 Pandemic is very real for us and could be life-changing for Helena if handled carelessly. Seeking God’s will is very important when so many people and bureaucrats are weighing in with their opinions. The care Helena receives or does not receive at this time rests solely with the decisions we make as her parents.

Even though many seem to be going back to business as usual, it is our belief that our family needs to continue social distancing practices. We have to stand strong on this decision. I am praying that the virus will weaken or that something else will happen soon to allow children with health risks to attend school without concerns over health. Our job is to protect Helena.

Staying at home has created difficulty for many who need to work. There are many families with at risk members who need to stay home, and we are living this situation at the moment. There are people who need to work and have to even though they should be staying home due to health risks. I just hope that as people return to normalcy, everyone can remember empathy toward those who need our protection or support. Christians should take most seriously the responsibility to love others.

You may not agree with everyone – but you can always be kind.