Living in a Pandemic has made for interesting times. In the beginning, I panicked just as did the rest of the world. I read anything I could get my hands on. I tried as I might to weed through the media bias as the pandemic became a beacon of political ammunition. At the end of the day, put most of the articles down, turned off the news and tried to step out of the social media world.
I was (and at times remain) angry.
I became resentful.
You see this virus, COVID, places no increased impact on our family than any other cold, flu or nasty little bug that flows freely through communities on any given day, pre-COVID.
For 14 years we have juggled going out in public and "self-quarantining" when necessary.
Our family has a member who is a little more fragile. A family member who has a compromised immune system requiring IVig. A family member with a heart deformity. A family member that has been trached. A family member who is high risk and susceptible 365 day a year.
For 14 years our family has used common sense without a government official demanding it. Without a doctor lecturing us. Without "friends" on social media lecturing me on a subject they probably barely passed in high school, let alone studied in college...Biology, Virology, Microbiology.
The flu pandemic that sweeps over the country (and world) each and every year places the same demands and risks to our elderly community, pregnant women, and individuals with compromised immune systems. Furthermore, the wave sweeps through our schools with mass infection - no precautions - no shutting the schools down - no closing of businesses - no media hysterics - no mention of precautions by "friends" on social media - no political ramifications. Hospitalizations high. Death tolls tend to be high. Seriously, look at data from past years.
The isolation. It has been part of our normal for 14 years. Isolation is not meant for human consumption. People love people, people want to be included.....want to be remembered...want to feel needed....people need touch. The bottomline - when you aren't present, people forget you. On a perpetual roller coaster, we frequently loose contact with our church family for months, sometimes years at a time. We fall out of friend groups because we've said "no" too many times. Living with Ivey's health is isolating. As I watched the world fall into isolation like we often are, well, I looked around and asked "What's the big deal?" (I know- cold-hearted, right?) (Not so supportive, not the same grace I ask for.) I wanted to look at the world and say the tried and true script that is often repeated to me - deal with it, adapt, look at the good things coming of this - and maybe a few times I did say it to the unsuspecting friend. I am sorry.
The world and our communities stepped into a new world with high health risks and they completely fell apart. People became self righteous.
I had to step back...... and try to lend grace (probably not my strength) to a world that has been slammed into our world. Our first steps into a different world weren't all that pretty. I still get the uglies some days. But it seems the world finally took a deep breath. And in many instances the world is now slowly releasing that breath. In the release the world is acknowledging that humans cannot and do not control everything, even with the most rigorous efforts. Repeat, humans are not in control.
As for isolation, finally without even realizing it, the world, our community, our church and our schools began to try to make this world inclusive for families JUST LIKE OURS. Families like ours, the ones with circumstances keeping them from life outside of a box, were finally finding their way in through innovation and Zoom and Facebook live. The world is feeling pressed by isolation, but our isolation in a unique way has lessened.
Here's the thing. For our family, this is actually the safest we have ever felt moving about with Ivey.
In some ways I have been able to smile and know why God gave Ivey to our family. We can handle the sacrifices she demands of us. That's not saying we are always smiling about it or even happy about the sacrifices. I have my self pity days. My friends know this well, and somehow, they have loved me through it. We take on the challenges through the strength of those around us. We are resilient.
I read an article in the early COVID days that simply said in all the data that was being accumulated, there was too little on kids with complex medical needs to determine how it affected them.
The parents were already taking the necessary precautions due to the life style demanded by these kiddos. Simply, the complex kids weren't catching it at the rate of the world around them.
Then, at the end of this summer, Ivey's pulmonologist finally started getting data on complex kids. The complex kids were catching COVID, some were being hospitalized, some stayed home, and yes, a very small percentage were dying. Those that passed were fragile, it happened to be COVID, but any illness would have been too much.
If you take anything from this, please let it be the following words. I am going to share something very personal with you. Something hard. Something that haunts me often in my dreams, in unexpected moments. Something that I know, that my husband knows. Something no parent ever wants to know.
Once upon a time Dr. Rogers sat Matt and I down to talk about Ivey's medical future. He said we would be faced with many hard medical decisions. Listen to the doctors. Ask questions. Then, use that information to make the best informed decisions for Ivey. He continued to say that there would be a day that we might have to make a hard decision quickly. We will be faced with deciding to continue chasing Life or know when we must let Life go. He said we would know when we were there. We needed to decide now what we would do then. We did not need to make that decision in high emotional turmoil. In that moment he said to go home talk about our hard lines so that when the day came and that quick decision was facing us, we could make the most informed decision and know that it was well thought out in advance. We have done that. We live with decisions we know we will meet one day. Before we left Dr. Rogers that day, he emphasized that we let Ivey live her fullest life. Give her life. Pursue life with her. Do not fear her LIFE.
I can honestly say, we have tried to give her the world, knowing that she is the actual gift to the world. We could choose to fear her getting sick. We could hide. We could fear people. And maybe in a sense we do, I do. But we have not let that fear stop her, or us, from living. Maybe we do live differently. Miss a day of school. Not attend church. Skip that birthday party. The risk is always there. It always will be. We are super precautious. But Life is precious. Life is meant to be lived. So, mid-pandemic, with the world in disarray, faces covered with masks, people social distancing, and finally with on-demand hand washing - I took Ivey to Disney.
Now - I am past being resentful. I mostly feel a little sorry for all those paralyzed by fear because of the news or a political party taking a hard stance on a virus that isn't political. Like many these days, I rarely look at social media. (Or I have secretly silenced friends for 30 days). I listen to news through filtered ears. I listen to more than 1 news source. I read articles from less popular sources, less bias. I am sending my girly girl to school in a mask or face shield and I trust that those working with her put her best interest in place. She LOVES her friends. She loves school. She loves to learn. I saw the effects of taking that away from her during the spring. She was stressed with LIFE stopping. Seizures took hold and ravaged her body and mind. Maybe the world wasn't ravaged by seizures but something else happened and vitriol erupted.
Look at Ivey. Take Dr. Rogers advice. Be informed. Take precautions. Live in the midst of "it".