Siblings of children with complex medical conditions live a different life than their peers. Though we parents try our hardest to lead a life that resembles others, we just cannot due to the constant uncertainties. However, this life we were entrusted is precious, and every member of the family has a role to play. These kids carry a weight their peers know nothing of, and they carry this heaviness well.
I’ve written in the past about how siblings to a child with complex or special needs grow up to become better humans. It’s true, and during the COVID-19 pandemic these siblings have rose to the occasion and should be considered amongst the MVPs, the heroes, the ones who bore the cross well all for the sake of another.
When the news hit that this deadly virus was spreading throughout the country, I began preparing my family for what I thought was to come. My boys were no strangers to masks as we use them often to keep our Connor free of other viruses. They were used to isolating, mom researching, dad reminding them of healthy habits, and Connor needing us to step up to protect him. In their minds this was normal, but deep in my bones I knew this was anything but.
Connor was born with multiple medical conditions and disabilities that have significantly impacted his health. Numerous simple colds turned into pneumonia and collapsed lungs which required multiple weeks of a ventilator sustaining him in the ICU. As he’s gotten older his health has become more fragile, his lungs weak and damaged, and his immune system drained. Therefore, we have become a family of bears. Daddy bear, momma bear, and brother bears – Aaron and Cooper – protecting Connor at all costs.
Our typical life, outside of a pandemic, includes the usual’s – school, extracurricular activities, sports, church, family gatherings, sleepovers, movies, vacations, birthday parties, all of it. And though it can sometimes be difficult for our family to make these things happen, we prioritize it so all our boys can thrive.
Then, sometime in March, the world stopped due to the novel coronavirus. We stayed home like everyone else – enjoying our time together in new ways. We realized the gravity of the situation, we spoke with Connor’s specialists frequently, we researched and read medical journals, and we learned the outcome this world stopping virus would likely have on Connor. We did things we haven’t done in years all the while realizing not every family was so fortunate. We prayed, and we prayed, and we prayed for the end to be in sight so no more lives would be taken, especially our boy’s.
A few months later we watched our community begin to resume their normal lives. I had studied every aspect of the virus’s transmissibility and allowed a few outings to give my other two boys a much-needed mental health break. Connor stayed home while we safely enjoyed a baseball game, a trip to Target, and so on. I reeled it back in with the rolling wave of the surges while we watched the rest of the world carry on and create false narratives about the virus and it’s impact.
Our outings abruptly ended as covid test positivity rates reached higher and higher percentages. It was simply not safe to unnecessarily expose ourselves and bring the virus home. As a parent I’m able to instantly understand the seriousness of this pandemic on our family and I do what I must do, even if begrudgingly so, but my boys, did they understand? Of course, they did, but can their understanding of the gravity of our situation surpass their feelings of missing so many activities they typically enjoy? Will they resent Connor, or me? How do we make this work? These questions lingered until we had a long family discussion sometime in mid-August. Our life would look different than their friends; we would have to carry this cross all the way through even if others put theirs down. They understood, even if begrudgingly so. I shared a quote by St. Ignatius Loyola with them that I’ve grown to rely on in tough times. “If God sends you many sufferings, it is a sign that He has great plans for you and certainly wants to make you a saint.”
Over the past ten months siblings of a high-risk child all over the world have had to endure more than their fair share. These siblings have altered their schooling, missed playing sports, turned down birthday party invites, heard from friends about school dances organized by parents, watched as everyone else seemingly lived carefree, and listened to those claiming the virus was a hoax or only affected the elderly and the high risk. But the high risk is their sibling, and the pain of comments like those is excruciating. While facing these new challenges is not always easy, the role these siblings play in their family and the life they have lived has taught them something that cannot be learned any other way besides a life lived for another. They know worldly pleasures are insignificant, God will sustain them, and a life of love, sacrifice, and service is the Christian way.
My family, and other families like mine, are resilient. We adapt easily because we have no other choice. This is our hidden strength, or as my ten-year-old likes to say, our “superpower.” This hidden strength God has provided us sustains our families, allowing us to persevere even during the most terrible times – such as now.
When I asked my 16-year-old how he felt analyzing every decision he has to make in regard to keeping his brother well, he replied, “It’s like I have the weight of the world on my shoulders, but honestly I’m glad I’m the one carrying it and no one else. I know Connor is safe with me.”
When this dreadful pandemic is over and we think back on the MVPs of this unprecedented time, let us remember the siblings of children who were considered high risk to COVID-19. These siblings endured isolation, FOMO, ignorant covid rumors, and their anxiety ridden parents. They selflessly paused their life and gave up so much all for the sake of another – heroes in every sense of the word.